The Ultimate End-of-Life Plan

How one woman fought the medical establishment and avoided what most Americans fear: prolonged, plugged-in suffering

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Valerie Butler around 1990. After Ms. Butler developed heart problems, she refused surgery because of its risks.
Butler family

By

Katy Butler

Sept. 6, 2013 5:50 p.m. ET

My mother died shortly before her 85th birthday, in a quiet hospital room in Connecticut. One of my brothers was down the hall, calling me in California to say, too late, that it was time to jump on a plane. We were not a perfect family. She did not die a perfect death. But she died a "good-enough" death, thanks to choices she made earlier that seemed brutal at the time.

She slept in her own bed until the night before she died. She was lucid and conscious to the end. She avoided what most fear and many ultimately suffer: dying mute, unconscious and "plugged into machines" in intensive care; or feeling the electric jolt of a cardiac defibrillator during a futile cardiopulmonary resuscitation; or dying demented in a nursing home. She died well because she was willing to die too soon rather than too late.

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Valerie de la Harpe Butler and Jeffrey Butler as university students in 1946. The couple came to the U.S. from South Africa and had three children.
Butler family

Don't get me wrong: My mother, Valerie de la Harpe Butler, loved life. She was descended from Swiss-French and Dutch Calvinist pioneers who "trekked" with their ox wagons into the dusty interior of South Africa in the mid-1800s. She and my father, Jeffrey Butler, left their African homeland in their early 20s, bursting with immigrant vigor, raised three children (all of whom ultimately moved to California) and built a prosperous life in the U.S. My father became a college professor. My mother, an amateur artist, photographed Wesleyan University faculty for their book jackets, practiced Japanese calligraphy and served tea at four without fail.

When she got breast cancer in her 40s, she did not hesitate to undergo medical treatment at its most brutal and effective. After two mastectomies and radiation, she put up her blonde-streaked hair in its classic French twist and returned to the world as the beautiful woman she'd always been. Even as she approached 80, she hiked 2 miles a day, sewed elegant blouses on her Swiss sewing machine, weeded her garden and even stained her own deck.

She also spent six years as a family caregiver, after a crippling stroke destroyed my father's independence when he was 79 and she was 77. A hastily-inserted pacemaker forced his heart to outlive his brain, and she watched him slide year by year into dementia and misery. His medically-prolonged dying made her painfully aware of health care's default tendency to promote maximum longevity and maximum treatment. It wasn't what she wanted for herself.

She was not alone. In California, my home state, a 2012 survey by Lake Research Partners and the Coalition for Compassionate Care of California found that 70% of state residents want to die at home, and national polls have registered even higher proportions. But in fact, nationally, less than a quarter of us do. Two-fifths die in hospitals, and a tragic one-fifth in intensive care, where deaths are often harrowing. This is an amazing disconnect in a society that prides itself on freedom of choice.

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The Butlers at their wedding in September 1947.
Butler family

This disconnect has ruinous economic costs. About a quarter of Medicare's $550 billion annual budget pays for medical treatment in the last year of life. Almost a third of Medicare patients have surgery in their last year of life, and nearly one in five in their last month of life. In their last year of life, one-third to one-half of Medicare patients spend time in an intensive care unit, where 10 days of futile flailing can cost as much as $323,000. Medical overtreatment costs the U.S. health care system an estimated $158 billion to $226 billion a year.

Why don't we die the way we say we want to die? In part because we say we want good deaths but act as if we won't die at all. In part because advanced lifesaving technologies have erased the once-bright line between saving a life and prolonging a dying. In part because saying "Just shoot me" is not a plan. Above all, we've forgotten what our ancestors knew: that preparing for a "good death" is not a quickie process to save for the panicked ambulance ride to the emergency room. The decisions we make and refuse to make long before we die help determine our pathway to the final reckoning. In the movie "Little Big Man," the Indian chief Old Lodge Skins says, as he goes into battle, "Today is a good day to die." My mother lived the last six months of her life that way, and it allowed her to claim a version of the good death our ancestors prized.

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Valerie Butler in 1986.
Butler Family

In the early spring of 2009, I discovered that my mother, then 84, could no longer walk around Wesleyan's indoor athletic "cage" without catching her breath. She had developed two perilously stiff and leaky heart valves. In a pounding rainstorm, I drove her to Boston's Brigham and Women's Hospital, a pioneer in heart-valve replacement surgery for the very old. The surgeon told her that if she survived surgery, she could live to be 90. Without it, she had a 50-50 chance of dying within two years. My mother weighed the surgery's real and often underplayed risks of stroke and dementia. Then she said no.

Her later cardiologists were disturbed by her decision. But I would discover that people of my mother's age are often like Humpty-Dumpty, seemingly vigorous until a mishap, a traumatic surgery or a hospital-acquired infection sets them on a rapid downward spiral. One of my friends watched her 87-year-old mother die gruesomely, over three months, after exactly the surgery my mother rejected.

Still, my mother's "heart-failure management" nurse urged me to get her to reconsider. Aside from her heart, the nurse said, my mother was healthy and full of life. Torn, I called my mother's internist. "I know your mother well enough, and I respect her," he said. "She doesn't want to risk a surgery that could leave her debilitated or bound for a nursing home. I think I would advise the same decision if it was my Mom."

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Ms. Butler with husband Jeffrey and daughter Katy, the author, in 1983. Even in her later years, she hiked 2 miles a day, sewed blouses on her sewing machine, weeded her garden and stained her own deck.
Matt Herron

I called my mother and said, "Are you sure? The surgeon said you could live to be 90."

"I don't want to live to be 90," she said.

"I'm going to miss you," I said, weeping. "You are not only my mother. You are my friend."

That day I stopped pressuring my mother to live forever and began urging her doctors to do less rather than more. A generation of middle-aged sons and daughters are facing this dilemma, in an era when advanced medical technologies hold out the illusion that death can be perfectly controlled and timed.

This was not the world of our ancestors. From the plagues of the Black Death through the 19th century's epidemics of typhoid, childbed fever and tuberculosis, they helplessly watched people die, from youth to old age. By necessity, they learned how to sit at a deathbed and how to die.

That changed in the 1950s and 1960s, when doctors and inventors in the U.S. and Europe cobbled together astonishing new medical contraptions from washing machines, vacuum cleaners, cattle watering tubs, orange-juice cans and sausage casings. Materials invented or pressed into military service during World War II—nylon, Dacron, silicon, plastics—were put to miraculous new civilian uses.

Vaccines, antibiotics, dialysis, open-heart surgery, CPR, the 911 system, cardiac defibrillators, safer surgical techniques, pacemakers—a whole panoply of lifesaving inventions transformed medical practice and all but abolished natural death. Dying moved from the home to the hospital, obliterating Western death rituals, transforming the meaning of the body, and changing the way families, doctors, nurses—and even the dying themselves—behaved at the deathbed. Dying was transformed from a spiritual ordeal into a technological flail.

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After her husband suffered a stroke, Ms. Butler spent six years as his caregiver. The couple in May 2006, here.
Butler Family

Family members who once wiped the brows of the dying were restricted to visiting hours. Often there were no "last words" because the mouths of the dying were stopped with tubes and their minds sunk in chemical twilights to keep them from tearing out the lines that bound them to Earth. Months after an ICU death, family members experience high rates of anxiety, depression and symptoms of post-traumatic stress.

As the up-to-the-minute machines spread to newly prosperous countries around the world, they transformed the look of the dying body as well. "When I first started out washing and coffining corpses early in 1965, the majority of cases were home deaths," wrote the Japanese Buddhist mortician Shinmon Aoki. "[The bodies] looked like dried-up shells, the chrysalis from which the cicada had fled.

"Along with the economic advances in our country, though, we no longer see these corpses that look like dead trees," he wrote in his memoir, "Coffinman." "The corpses that leave the hospital are all plumped up, both arms blackened painfully by needle marks made at transfusion, some with catheters and tubes still dangling. There's nothing natural about the way they died, as the image of dried leaves falling in autumn would impart. This tells us that our medical facilities leave us no room to think of death."

In the 1400s, a best-selling how-to book called "Ars Moriendi," or "The Art of Dying," offered saints and sinners alike a road map to the deathbed—framed not as a place of meaningless suffering but as a mighty, transcendent battleground where angels and demons struggled for control of the soul. Family and friends gathered at the bedside and recited prescribed prayers, giving the dying person reassurance, faith and hope. Similar guides, adapted to Protestant and Quaker theologies, stayed in print until the late 1800s. Because we do not have such pathways now, it's no surprise that relatives often panic and insist that "everything be done," even things that are torturous and futile. Any plan seems better than no map at all.

That spring my mother fixed cracked windows in her basement and threw out files for the book my father never finished writing. She told someone she didn't want to leave a mess for her kids. Her chest pain worsened, and her breathlessness grew severe. "I'm aching to garden, to tidy up the neglect of my major achievement," she wrote in her journal. "Without it the place would be so ordinary and dull. But so it goes. ACCEPT ACCEPT ACCEPT."

In July, a new cardiologist suggested inserting stents to reduce her chest pain and an experimental mitral valve replacement, performed by floating the device down a vein. "When I mentioned stroke risk," he wrote in his clinical notes, "She immediately was turned off and did not want to pursue further discussion, again desiring only palliative care."

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The Japanese brush painting that she made and labeled, 'For my memorial service.'
Butler family

That August, she had a heart attack. One of my brothers flew to her hospital bed while I raced to meet a work deadline. The next day I got a call from yet another cardiologist who had been handed my mother's case. The narrowing in my mother's heart vessels was in places too difficult to stent, she said. They were preparing her for heart bypass surgery and valve replacement—the very surgery she had rejected five months before.

She seemed to be heading down the greased chute toward a series of "Hail Mary" surgeries—risky, painful and harrowing, each one increasing the chance that her death, when it came, would take place in intensive care. I later discovered that the cost to Medicare would probably have been in the $80,000 to $150,000 range, with higher payments if she'd suffered complications.

Burning with anger, I told the astonished cardiologist that my mother had rejected surgery when she had a far better chance of surviving it, and I saw no reason to subject her to it now. I later found that in a major study, 13% of patients over 80 who underwent combined valve and bypass surgeries died in the hospital. In a smaller study, 13% died in the hospital and an additional 40% were discharged to nursing homes.

I called my mother in the hospital.

I said, "I think we're grasping…"

"—at straws," she finished my sentence. She was quiet. "It's hard to give up hope."

Four hours later she called back. "I want you to give my sewing machine to a woman who really sews. It's a Bernina. They don't make them like this anymore. It's all metal, no plastic parts."

"I'm ready to die," she went on. I could barely recognize my stoic and reserved mother. "Cherish Brian," she said, speaking of my long-term partner. "I love Brian. I love Brian for what he's done for you."

My mother was now sick enough to qualify for hospice care, and came home tethered to a portable oxygen tank. She apologized to me for not having sufficiently appreciated a loving little book I'd handcrafted in honor of her 80th birthday. She updated her will. A hospice nurse cut off her long white hair. She took digitalis and squirted morphine under her tongue to manage her intense heart pain.

She watched a moth emerge from a chrysalis and took her last photograph of its wet crumpled wings. She pulled out her Japanese ink stone and calligraphy brushes and brushed out a final one-stroke circle, what the Japanese call an enso. Below it she wrote, "For my memorial service."

I was making flight plans when she and I talked on the phone for the last time. In an outpouring, I told her how I treasured the memory of her ritual teas and regretted not having learned more of her elegance in domestic matters.

"But Katy," she said, her voice weak. "You're good at other things." Then she said, "There isn't much time."

That night she could not stop vomiting. She was taken to the inpatient hospice unit with one of my brothers following the ambulance. Once settled into her bed, she took off her hammered silver earrings and said to the nurse, "I want to get rid of all the garbage." Naked she had come into the world, and naked she would return. The next morning she told my brother to call his two siblings in California. By the time he got back, she was dead. He broke into sobs.

She died too soon for my taste. I agonized over my failure to fly in and help her. But she died the death she chose, not the death anyone else had in mind. Her dying was painful, messy and imperfect, but that is the uncontrollable nature of dying. I tell you her story that we may begin to create a new "Art of Dying" for our biotechnical age. She died a good-enough death, and she faced it head-on.

Adapted from Ms. Butler's book, "Knocking on Heaven's Door: The Path to a Better Way of Death," to be published Sept. 10 by Scribner.

My mother died in 2006 at the age of 94, still in control and refusing to be hooked up to the life extending machines the medical establishment wanted her to have. A few months prior to her death we discussed our attitudes toward dying. This discussion was spurred by a discussion I had with a friend who is a geriatric physician about the indignities forced on people by well-meaning relatives who demanded heroic efforts be expanded at any price to keep a person alive when there was no hope for achieving a life with any quality. My mother clearly and emphatically made her point for no heroic measures. A few months later she fell and fractured her spine. A very painful and dilating injury. When I was with her in the emergency room for several hours while we waited for a bed I knew that she was being very introspective. The doctors were planning a rather complicated procedure where an adhesive would be injected into the crack in her spine. After one session lying in a cold room waiting for an MRI my mother informed me she did not want to proceed. At that time she started refusing to eat. Fortunately I found a web site that helped me understand the process that happens when one decides to quit eating. (http://www.seriousillness.org/lane/medical/nutrition.html). I respected her wishes by insuring there was always food available if she wished to eat. When I reminded her that she would have to eat if she wanted to get better she would smile and say “I’m fine son”. She died in about three weeks, on her terms, in a loving home care environment. Supporting a loved one in recognizing that death is a part of life requires courage and understanding on the part of the family and caregivers. Please respect your loved ones decisions. The emotional pain of the survivors is still great but it is better for all.

MY MOTHER WAS ALSO 85 WHEN SHE DIED FROM LUNG CANCER AFTER SMOKING FOR 70 YEARS. SHE LIVED FOR 18 MONTHE AFTER DIAGNOSIS AND DIED QUIETLY IN HER SLEEP. HER DOCTOR RECOMENDED AGAINST TREATMENT (CUT, BURN, POISON) AND SHE/WE FOLLOWED HIS ADVICE. FRIENDS MOTHERS WENT INTO TREATMENT AND HAD A HORRIBLE END OF LIFE, AND DEATH. I MISS HER VERY MUCH AND I HOPE I HAVE AS MUCH COURAGE AS SHE HAS THROUGH OUT HER LIFE AND AT THE END.

I have been an active impatient and outpatient general internist for 30 years. I am spending the end of my professional career as the director of a residency program. Nothing I teach the young physicians in my care will be as important as the lessons espoused in this beautifully written story. I am also sharing it with my Sunday school class. It is so important that the lay public read this also. Misconceptions about illness and death are common, and an article like this is educating for all.

I am concerned about the tone of the article in that it seems to imply that age is a reason to forego life saving procedures. My mother had a heart valve operation at age 82 and is now 90 and living a very full life. She would not be alive to write her own poetry, which is beautiful, were she to have decided to just let nature take its course. I hope we don't begin to find subtle messages to the elderly as a means of rationing healthcare.

Learn all you can, and pull all the strings you can, to get in on the radical extension of healthy lifespan likely in the nest few decades. See Aubrey de Grey's book Ending Aging. Log on to maxlife.org. Would you rather be one of the last to die early, or one of the first to live long?

If you get bored by long life - a frequently voiced concern - just stop showing up for your quadrennial aging reversals, and in time dear old mother nature will solve your problem - permanently. Better to develop new interests.

Vital research is stifled because the FDA does not regard aging as a disease. But many of us who suffer from it do so regard it. Something that first uglifies (at least in this culture), then debilitates, then immiserates, and, finally, kills everyone not already dead from other causes , is a disease.

I want to add another thank you to the writer for sharing the beautiful photographs of her mother and family. She simply exudes grace and intelligence from the cover portrait. This is an image that will remain in my heart, along with the lovely message of 'a good death'. We all have much to learn.

If anyone listens closely, our society has virtually eliminated the word 'death', replacing it with the term 'passing', which attempts to deny or soften the finality of life . This article and accompanying comments are the first public conversation I've noticed to address death in such real terms. With the flood of baby boomers heading toward the inevitable, it might be culturally wise to continue to discuss death more openly. It may not remove the fear of death, but might help people to realize that 'modern medicine' and the ICU are often not the best option as the end of life approaches.

My 93 year old aunt died last month, relatively peacefully. The crowning glory was the most perfect Catholic funeral that helped to bring hope and healing to the many months and years of steady decline. I realize many have decided for themselves that a life without faith has its merits, but this is what my aunt longed for, and it brought an ethereal peace to those of us left behind.

I grieve with the author for the loss of her mother. She seemed to be a truly wise woman who understood what was feasible and reasonable. She chose to leave this world on her own terms and I truly respect both her and her family for allowing this to happen in a dignified manner.

I practice primarily in the inpatient setting and more too often than not see what I feel both professionally and personally is care delivered which for all intensive purposes is futile. Modern medicine is truly amazing in what can be done to heal. In the end however, we all face the inevitable. I have often remarked that death in the United States is felt to be an optional choice. I try to counsel and practice medicine that focuses on what can be done to preserve quality of life, not quantity. I have made it quite clear to my spouse and family that should I succumb to an illness that leaves few options for me attaining a meaningful life after treatment, to please pursue all palliative care options instead. I do not want to live to a ripe old age with severe debility. It is my hope that more of my colleagues practice this approach to medicine. Time will tell...

Experiencing my mother's 3-week intubated ICU terminal hospitalization in 04, and my dad's 3-week MRSA terminal hospitalization in 05 made me an end of life reform advocate. I began then, and continue now, seeking to identify, name, and overcome obstacles to peaceful dying. A range exist, and those that are the hardest to ascertain are those that are so in our milieu that they are like the proverbial water we swim in and hence don't know exist. A new one that's occurred to me is what I call our opaque dying marketplace. We *do* buy end of life, or dying, services from medicine. But we never know what we're buying until we're already enmeshed in dying because medicine remains silent about it. I can't think of another service we buy sight-unseen with no prior description. So, as with the need for medical pricing transparency so that we may shop based on price, we need dying services transparency so that we may shop based on shared end of life orientation. The best medicine has come up with so far is to ask us for advance directives. Now, we need to ask institutions, departments, and any doctors/nurses involved with end of life treatment to provide advance disclosure of the type and range of dying services they offer on a continuum from "we never say "die" and persist through persistent vegetative state" to "aid in dying" (there are 3 steps in between: mainstream management and either conservatively or aggressively managed palliation). When medicine declares itself like may seek like. This will relieve a lot of stress for all of us.

During the past three years I have been at the dying bedside of 6 close relatives and friends.My mother passed at home after having heart failure. It was quite unusual that she lived so long after suffering a severe heart heart attack 20 years before. At the end she was on home hospice. My two brothers and I cared for her along with the help of the hospice team and an excellent 24 hour aide. My mother had a good death similar to the woman in this article.My 95 year old mother in-law also had a good death at home. She had severe dementia and was cared for by my wife, her 4 sisters and home hospice. Her daughters and my 96 year old father in-law made the difficult decision not to have a feeding tube when she stopped eating at the end. She had a good death.My close friend from high school at the age of 55 passed after a long battle with extensive cancer. His oncologist treated him agressively until the very end when his wife chose to have home hospice. He slipped into a semi-coma and was made comfortable with morphine absorbed in his mouth.My 85 year old uncle passed from dementia in a hospital after my aunt and cousins stopped all agressive treatments. My 85 year old frail uncle passed from a rare leulemia. He received chemotherapy in a hospital with a slim chance of survival. Having no white blood cells to fight a servere infection my cousins made the decision not to resusitate him. He died peacefully in the hospital. My aunt who was my uncle with leukemia's wife passed in an intensive care unit from heart failure. The cause was undetermined as she went into shock before any diagnostic tests could be done. My cousins and uncle decided after recomendations from her doctors not to resusitate her. She died peacefully in the intensive care unt.A cousin of mine who was an elderly retired priest passed with the help of home hospice. He was fortunate to have 24 hour home care provided by his archdiocese. He had a cancer which caused kidney failure. He decided not to go on dialysis. He always wanted to die in his mother's home. God and home hospice were able to grant him his wish.It's been a tough 3 years. My family and friends all seem to have no regrets in the decisions that where made by them and those who have gone to a better place.My 97 year old father in-law with a better mind than mine sits comfortably in his parlor chair drinking his 3 glasses of gallo burgandy every day and is in bed by 6:39 PM.,He had a coronary bypass at 88 after having chest pain on a daily basis with no relief on medications. At the age of 91 a small spot on his lung which was found when he had surgery doubled in size on a yearly cat scan. At his request and against the advice of his doctors a brave doctor performed a biopsy, it was a localized cancer. Again against the advice of his doctors we found a brave surgeon and a reluctant anesthesioligist. He had microsugery. The tumor was completely removed. He had no further therapy and cat scans. He says it's the wine that keeps him going. About 20 years ago he had surgery on his hand. He had to fast for 24 hours and had a seizure. He had a normal brain wave test. He has been on seizure medicine since then. When he got home the next day he started drinking his wine. He says he has good genes. I say he is a lucky man!By the way I am a retired physician. Other than my mother's care I had very little to do with the final decisions.I did find the best surgeon in the world named Dr. Sonnet for my father in-law. All decisions in severe medical illnesses are difficult and take their emotional toll. End of life issues are exremely difficult. They are best made by the individuals and families with the best advice from doctors who care.

This was the process my husband and I went through and I am grateful to have had the strength at the 11th hour to fight the well stocked hospital panel of "professionals" set to help me chose to help my husband fight and for what they did not know - but I was determined not to let him be used as their science project. The saddest thing is the extra days of pain and suffering I allowed to happen to him because of the information or lack there of that I was receiving from the "professionals" - dying or moving on shall we say - should not be so sad an event as we are learning in todays world but instead revert back to understanding embracing and celebrating the ultimate achievement one accomplishes when moving on with dignity - it is not a failure that one died but instead a great leap to the finish line on this plain - the doctor in the facility that we ended up for the final days of our time together said that by my placing the DNR (which is what my husband wanted) and I quote "I am passing the wrong message to his staff" and I removed the DRN questioning what I thought was right - then the love for my husband of 22 years came back to me in full force - Put the DNR back in place - looked the surgeon in the eye and told him I am sorry if he and his staff are hearing the message that I am giving up on my husband - because the message I am saying here is " I love him enough not to allow him to be in pain any longer and help him move on" this story has hit home for me in more ways than you know and my husband was only 49 with the last 7 years living with cancer and it was okay - the medical profession has a long long way to go in this field - they bring life in with such joy - they should see it out with the same - these souls are being born into another space and I hope I go out with as much dignity

I just got home after visiting my 91 year old mother in a nursing home. She has Parkinson's and now has Parkinson's Dementia. PD is quite different from other forms of dementia in that some near term memory is there, more and more time is spent in a delusional state. She is depressed (who not be) and is confined to a wheelchair. She is usually angry with me because she some how feels that I am "responsible". She somehow thinks she could still live alone in her home! Sadly she got to where she is now after a number of "life saving" surgeries - she insisted on having them. Today she breaths - but is not really alive.

My mother embraced her death by cancer as a respite from Parkinson's disease. Dying with dignity at home, even if sedated to abate agonizing pain, must be better than to live out one's last weeks in a hospital on "life support." I think our Creator knows just when to call us home, and we should listen.

This is truly an important perspective to have. I practice medicine in a hospital where we often see people asking us to do too much. We have the technology to keep hearts beating a long time. However, this can commit people to prolonged lives with significantly reduced quality of life and increased care needs.

Most important - know what you want, and push your doctor to tell you what may lay ahead. Often people don't want to think about what it may be like to live with reduced function.

Personally, after what I have seen, I don't want to live to 90. I hope to live well in later life, and could imagine living reasonably well even into my 80s. I have seen very few people truly live well after 90. While I am sure there are many notable exceptions to what I have seen, I do hope I will be taken from this earth prior to then.

I think the doctors and medical professionals understand this better than the lawyers and judges we have. Just make sure they don't have to worry about them. Write it down. At the end, they don't want to be stuck anymore that we do.

Some time ago I wrote you to relay my sympathies to your father's death. I felt honored to have known him, albeit briefly, when he was our rugby coach at Wesleyan lo these many years ago.

He was a kind man and a very good coach with what I thought at the time a good perspective on life.

I met your mom only a few times, but it seems that she also had a fine perspective on life, living and departed on her terms.

It was nice to read about your mom and her lessons on living and dying, and your thoughts on the process, too. I wish you all the best in your life and trust it will be filled with "good" perspective and one which will be a bit more complete, too.

Two weeks ago my friend Marion died at home. She was 93 years old. We met over a year ago when I saw her trying to walk her dog, and I offered help. I walked Sally twice a day after that, and visited Marion often. Marion was alone, meaning she had no children and only a 87 year old ailing brother who lived several states away. So it was me and a few neighbors (all women) who watched over her during her last year. She was alert to the end - her end was not cancer or heart problems, but a series of falls that caused her to be in a nursing home twice. She detested these places, and vowed after the second one never to return. She contacted her attorney and did the necessary paperwork to assure only she could make decisions about her care. Finally Marion's third fall caused her to break her hip. She refused medical intervention (they of course wanted to operate) and so she was brought home from the emergency room without going to the hospital. Her end consisted of being bedridden for 2 weeks - at home at least, with her beloved dog Sally - while hospice looked over her and kept her relatively pain free with morphine. I did not know it at the time, but since found out that morphine in a situation like this results in the body shutting down. From the time I met Marion she said she was ready to die, and that she had lived a good life. She - we - all prayed for God to release her. At one time (before they had figured out the right dose of morphine) she asked the hospice nurse plaintively: "Are you here to shoot me?" I sit here now with Sally at my feet and wonder, Why couldn't there have been a better and more humane way for Marion to make her transition? Perhaps she is one of the lucky ones.

With all due respect to the author, everyone is different. My mother suffered congestive heart failure at 79 while visiting me in California. Her health history, though not her family history, had been quite similar to the subject of the article up to that point. She received heart valve surgery at Stanford Med Center, recovered nicely though her chances immediately after surgery looked none too good. She died in her sleep, in her own bed ten years later on a day during which she helped paint my sister's newly remodeled kitchen, ate three normal meals, and played two hours of bridge in the evening. She also graced us with ten more years of her lovely presence. Was the surgery worth it to society? Don't know, but it was worth it to us.

An astonishingly familiar story: My mother died 5 years ago after having elected to not undergo chemo following what appeared to be a successful lung cancer surgery. I was uncomfortable with her decision to feel good for her last year. I, to this day, admire her confident approach to the end of life, even though it did claim her 15 months later. I hope that I can be that strong.

The problem is that especially in the area of heart disease, we've made it so the body outlives the mind. Certain medical professionals are just really bright technicians and may not have a full grasp of this. They really should be wary about putting pacemakers in older patients who show even early signs of dementia. Having your mind go out completely while your body sticks around, seemingly indestructible, is a bad way to go.

When she was 91, my mother started to pass out, but then come to. On one occasion the ambulance came before she came to, and was taken to the hospital. They performed every test except the one on her carotidartery, because they deemed her too old for surgery. (It still would have helped to know, and eliminate the other unnecessary tests).She was released and went to her cardiologist, who did the vascular test on her carotid artery, and sent her over for surgery immediately. She knew the risks. The surgery went well, and she lived another three years, able to attend the wedding of her grandson. If she had other illnesses or dementia, it might have been a different story. She had difficulty walking, but was still enjoying life, and was as sharp as she was 50 years earlier. Was there a risk? Definitely. But it all depends on the person.

I have been down this road, unfortunately, several times. I have had the guidance of an end of life plan and have battled the stakeholders without one. I have dealt with the US system of medical care and I have dealt with a touted socialized medicine system (horrible, abusive and inhumane).

Any quality system should be based on the decisions of the physician and the patient within the combined power of the available options, their insurance and ability to pay for the services sought. There is no room for uninvited 3rd parties.

This was an interesting article, but, for anyone who thinks that there is not a political strategy and motivation to this article is naive. Articles just don't end up in this paper just on the merit of the writing. Furthermore, the article goes well beyond telling the story of an individual's end of life events.

You can agree with the overall message or not. Just don't fool yourself that your not being lobbied.

On a serious note, this is a great article, and something that should be discussed MUCH more in many more media outlets. Problem is ....the HC industry is the biggest advertiser, and these stories don't really give with their P&L strategy. :(

My Mother was trained as a nurse in the late 60's. It was well known even then, that morphine sped up the process of death. As unrelenting hypochondriac, she's always asked for pain medication, regardless of the level of pain. Right before she went into assisted living, she point blank refused a morphine like medication that she had practically begged for.

I'll know if my Mom is ready to go if she ever accepts morphine as a pain meds.

I agree John. The choice made by the author's mother was a wise one, a courageous one, for her. But as inspiring as the article is, this is a choice that each of us should be allowed to make.

What I fear is the federal government making these quality of life decisions for us. Of putting the decision of whose lives are worth saving in the hands of the federal government. This is a very real concern for those of us opposed to the ACA.

My mother is currently battling leukemia at age 79. She has chosen palliative care, as aggressive chemo would kill her faster than the disease. She is at peace, and living pretty well in what are probably her last months. I'm glad it is her choice to make.

And there is the story that really matters.Steps to repair damage and deterioration mean more life to live, wonderful, priceless, potentially joyful, life.All those heartbreaking stories of someone dying after lengthy battles across a failing body are sad stories, but they are stories of battles lost. There are also stories of battles won, where even an elderly patient recovers and goes on to experience many more years with family and loved ones. Yes, cardiac surgeries for a 79 year old may run the risk of stroke and dementia, but they offer the reward of 2, 5, 10 or even more years. A lot of wonderful things can happen in that time.It'd be a shame to miss them if you didn't have to.

I never understood what was wrong with 'death panels'. As a society, we are spending way too much at the end of life. If anything, I thought fiscal conservatives would be fighting for death panels over the wishes of spend every last penny liberals.

Obamacare has Independent Payment Advisory Board (IPAB) only... no Death Panels anywhere in the new Healthcare Law PPACA.

This IPAB can ONLY recommend to HHS about how much to pay for certain treatment or drug therapy. It's up to the HHS Secretary to accept it or reject it.

I wish we had a REAL Death Panel to judge who can have open heart surgery, stent or valve transplant or not... If I were a IPAB member, I will refuse to do these procedures to anyone older than 85 years of age!

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